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It was a dreary Monday morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a intense sensation erupted behind my right eye. It was followed by rapid jolts, similar to electric shocks. As the school day came and went, the discomfort eased and then came back with increased intensity. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the agony remained unbearable.

The attacks returned repeatedly that autumn, and once more in the spring, soon forming an annual cycle. The autumn months were the most severe, then the late winter. I could predict the pattern: a warning sensation in the shower, early pangs on the train, full-on pain in class by 9.30am. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with intense discomfort around one eye that lasts up to several hours.

Approximately one in 1,000 people are affected by the disorder, and males are more often diagnosed. Attacks typically start with abrupt, severe pain focused on a single eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. I have the episodic form, which arrives in periodic bouts; others have continuous attacks, characterized by the absence of long symptom-free periods.

What connects sufferers is the severity. One study scored the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. Another found 64% of cluster patients experienced thoughts of self-harm amid attacks; the figure dropped to four percent when they were pain-free.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, like several causes, made things more intense. After drinking alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her episodes as drunken episodes. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was fired from one job, in part due to time off during episodes. Her definitive diagnosis came in 2002 at a specialist neurology center.

Still, the inability to organize life around unpredictable pain took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described across history. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the topic. They linked the disease to an evil spirit who attacked his sufferers' heads.

Ancient healing texts suggest unusual remedies for what modern experts would describe as a headache disorder. In the middle ages, migraine was recognised as a separate disorder, with treatments ranging from bloodletting to other, more folk cures.

It was a European physician who provided the first detailed account of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache happening and disappearing each day at fixed hours”.

The disorder were only officially classified by international headache committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key blood vessel which supplies blood to the brain. Leading experts in treating the disorder explain this.

In 1998, scientists published the findings of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, published in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, identification remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in 2014, after a doctor researched his complaints.

Specialists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain conditions, such as tension-type headache, before confirming the disorder. A detailed history is crucial: on which side do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to specialist centers. But many first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her symptoms. She thinks dentists still need greater awareness. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an attack in early 2021; a reassuring advisor talked them through oxygen therapy and medication until the episode passed.

Official guidance on management recommend that patients are offered high-dose oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include verapamil, which apparently helps manage the bouts of some people.

But leading neurologists believe the official guidelines need updating to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the cycle dictates the treatment.” Short cycles with infrequent episodes are managed with abortive therapy only. Longer or more intense periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the pain is that decreases nerve activity.

The official guidance need updating to reflect a